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Saturday, October 28, 2006

 

You've come a long way Baby

This isn't an easy subject for me. But it's a story that I'm sure many will relate too. I have Rheumatoid Arthritis. Thanks to the wonders of medical science and a doctor who worked with me for five years to get my "Molotov cocktail" just right, I am, for the most part, in remission.
I'm writing about this due to my pleasure at saying "I'm in remission" and hope that by sharing the beginning and middle of my journey (I won't say end, because this disease is not curable) I will provide someone out in cyberland with some encouragement.

Before RA (Rheumatoid Arthritis), I was already being treated for chronic sciatic nerve and joint pain-in brief, the physical medicine doctor treated me with over 45 cortisone injections and anti-inflammatories, plus physical therapy. When I questioned him about the use of so much steroids and my medical prognosis and if I may indeed have RA, he told me my blood tests were negative and my hands looked "fine" and said what I had was fibromyalgia and would have to learn and live with my limitations.

Thankfully about this time, our daughter pushed us into the world of computerization and the internet. With her deft hand at computers, she helped me do a lot of research about my symptoms. I found out a very interesting but little known fact: 1 of every 4 people who take the test to diagnose RA, do not register! In other words-a negative positive.
At about this same time period, other debilitating things began to break down: I began having pain and loss of use of my jaw, fatigue, low grade temperatures and heat spots in the middle of my hands and bottom of my feet.

My orthodontist (yes, I still wear a retainer) noticed my physical changes and insisted on an x-ray. There is was, the arthritis had hit my jaw. At this point, I was only able to open my mouth the width of one finger. My daily salads and raw vegetables had been replaced with soup and applesauce. Plus, my power-walking had been reduced to a hobble. Moving most of my body was excruciating. I'm sure I was not a bit of fun during this period.
At that point, I took my x-ray and told my physical medicine doctor that I wanted to see a rheumatologist. He wasn't happy, but agreed.
Within 3 weeks, I met with my new medical miracle worker. He took one look at me (this is why you go to a specialist) and said he knew I had RA. This was actually a relief!
Finally, I knew the last 5 years weren't just exhaustion from working 60+ hours a week. This wonderful man and his physician's assistant worked long and hard for my "recovery".
Because most of the beginning drugs can take upto 3 months to be at full power, change did not come quickly.

Most common medications for RA are planquenil and methotraxate. I was started on the planquenil and when there was only a tiny minute difference in my pain, the methotraxate was added. Of course, anti-inflammatories were de rigeour, plus various vitamins to replenish what the drugs took away. My medical team also had blood tests done every month to make sure other levels remained "normal". During this time, all the cortisone injections created cataracts for me, so at age 44 I had implants to correct the loss of eyesight.
Still not much improvement in the RA arena. However, thanks to some new drugs and this wonderful doctor a positive change finally came!

First, I did retire from running my own pre-school and day care. Too much for my body. Then I took six weeks to rest my very rundown physical self.

I was started on ENBREL injections. My husband, bless him, gives them to me once a week (I've opted to have 2 at the same time,instead of the super once a week version which is quite over the top in the pain area) Within 2 weeks of starting this medication I began to feel better! Within 2 months, I was power-walking 3 miles a day, doing strengthening exercises 20 minutes a day and working full-time.

The real miracle-for the first time in 8 years, no one around me could detect that I had something as serious as RA. I walked with a firm confident stride, I kept up with co-workers who were ten years younger and the best part, I felt good. It's been four years now and it continues to be the case. I've had some bad days, but in general, they have been relatively few.

To wrap up, I am sharing this story to hopefully give others who have health issues to stand up for themselves. Don't take one doctor's word on having to live in a certain way. And definitely do not assume that whatever you are feeling is nothing more than living today's stressful lifestyle.
Look for answers, with the internet available in 99% of households, you don't even have to leave the comfort of your home to do something proactive for yourself!

Another point, I've also made two good friends through support sites. Even though my husband is my lifeline and love, he cannot possibly relate to my bad/off days the way a fellow RA patient can. Even though we've never met face-to-face, these ladies and I share a bond that helps.
With a little perserverance there are ways to improve many of life's less positive situations, get out there and reach for the answers.

Comments:
Carine,

That must be a very temperamental condition to live with--sometimes you feel great, other times you don't. You have a great attitude and spirit, I would have the tendency to fall into a depression every time I didn't feel well enough to walk. You sound like you keep plugging along, and that your outlook is positive. God bless you.

I had read this yesterday, but didn't have time to post a comment...but you inspired me to take a power-walk before I got in the shower! Thank you for that, because it was late afternoon on a beautiful, crisp fall day...and it made me feel great! And I have you to thank for that.

Take good care,
Lisa
 
so glad you were inspired! I do so wish I could power walk right now. Now that I'm able to put both feet on the ground, that's my next goal.
Before the ENBREL, I wasn't quite so positive, but now I have to say, I enjoy each day as much as I can.
I do get very frustrated on bad days, I'm definitely human.
 
Carine,
I am happy to be your friend. This article is very informative and am sure will be a help to others.
A fellow RA survivor!

RRS
 
thanks Ruth, as you can see, I value our friendship as well.
hope you're having one of our good days.
 
When we write about something we know, for better or worse, we tend to let down our guard and let others in. Good job chica...and great attitude as well.

Here's to you and here's to your remission. ;)
 
thank you Teri, it's also hard to decide what to include and what to bypass.
 
Carine,
I am gingersnap from the SL forum. I posted a note to you in the 11/04 what are you having for dinner thread. I don't know if you saw it, so I'm copying it and putting it here.
Carine, I just read your RA post. I can't tell you how much I can appreciate your story. I have PA (psoriatic arthritis) and am fighting with my insurance co. to get Enbrel. I hope I have the good results that you've had. Many good thoughts to you and your continued health!

Gingersnap
 
Carine, i will read your post once i get home to Chicago..i am in London airport now and i do not have much time to board my flight..take care and have a wonderful day!
 
gingersnap, I promise to look at your post when I get home, I'm at the day job now. Thank you for reading and telling me your brief info. I do hope, for your sake that you indeed have the same wonderful result. feel free to contact me via here or on the forum anytime!
 
summer, safe trip!
 
Carine, really good post and very informative..sorry i missed reading it although i meant to come here and read it...but you know, life is busy!
support groups are great, and the internet is a great tool to have. the best thing in this post that you are feeling better and this is all that matters. hope all your days will be happy and healthy!
 
anonymous, glad you stopped by, hope to "hear and see"from you again and often. Glad you enjoyed the column!
 
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